My name is Savannah, I'm 17 years old and I have Cystic Fibrosis (CF for short). I was diagnosed with CF at only 8 months old due to "failure to thrive." That means I wasn't gaining any weight, which is a classic symptom of CF.
From the outside looking in, you would never know I had CF. However, there is a ton of effort that goes into maintaining my health.
|That's me ^ at an Ed Sheeran concert :D|
So, a little technical background about CF. It is a genetic disease and it mainly affects the lungs as well as the pancreas. In order to have CF, you have to inherit one abnormal gene from your mother and one abnormal gene from your father. When you have CF, it causes thick sticky mucus to build up in your body, mainly in the lungs and pancreas. Unfortunately, this thick mucus is a great breeding ground for bacteria to grow and typically leads to lung infections in people with CF. Also, once you have bacteria in your lungs, it's very hard to get rid of it permanently. I currently have two common strains of bacteria; staph and pseudomonas.
To thin the mucus and help prevent infections, I do 3 or 4 breathing treatments every single day. I also do my vest twice a day, 20 minutes each time. Breathing is most difficult for me when I wake up. I always start my morning with a treatment and I make sure I do one anytime before I leave the house, just to ensure I feel the best that I can. Often times that means waking up an hour earlier than most people would or leaving a bit later than you would have liked, but you gotta do what you gotta do. :) And for me, health will always come first.
After using my nebulizer, the nebulizer cups have to be sterilized before I can use them again. I use a baby bottle sterilizer to clean my nebs. If they are not sterilized with hot steam, they may harbor germs that could possibly cause an infection in my lungs.
Growing up, I was always encouraged to participate in all kinds of exercise. I have taken ballet, tap, taekwondo, yoga, aerobics, and currently I enjoy weight training 3-4 times a week. Exercise is important to give my lungs a workout as well as the rest of my body.
Four times a year I have to go to Columbia, SC to visit my pulmonologist, a doctor who specializes in lugs, to have different tests performed. The reason we have to travel 3 hours away to Columbia to see the pulmonologist is because they have to be a center that is certified by the Cystic Fibrosis Foundation to treat CF patients, since it is a rare disease.
If my numbers are even par with what I have had in the past, that’s great. If my numbers fall below where they were in the past, my doctor may want to admit me into the hospital or start me on home IV antibiotics.
So, if you’re wondering…here’s a breakdown of my typical day. Currently I am homeschooled, so this is not an "average" schedule, but it is genuinely what I do everyday. And I can work this around what I'm doing on a particular day. This is just what it would look like on a day where I'm just chilling at the house. :)
9:00 am - Wake up and do my first breathing treatment
10:00 am - Eat breakfast with enzymes, then take my first round of morning meds
11:00 am - 2:00pm - Do school work for the day
2:30pm - Eat lunch with enzymes and take afternoon meds
2:30 - 3:00pm - Do afternoon breathing treatment with The Vest
3:00pm - 4:00pm - Exercise
4:30pm - Have a snack such as fruit or cheese and crackers
5:00pm - Take evening meds
7:30pm - Eat dinner with enzymes
8:30 - 9:00pm - Do nightly breathing treatment with The Vest
Now if I went to "regular" school this schedule would be so much more difficult to maintain. Not impossible, but definitely challenging. That's why my parents and I found it best for me to just do online school.
I’ve never let CF stop me from anything I want to do. I feel just as normal and anybody else. Even though I have a lot of extra things to do each day, I still live a pretty normal life. I love to read, paint, take photos, travel, cook and hang out at the mall. I also work part-time for a make-up artist.
|Snapping some pics in NYC this past May|
|Afternoon tea before the Ed Sheeran concert|
|In front of the Eiffel Tower, May 2014|